Congenital Heart Defect Awareness Week

Some of you might have noticed the sudden apearance of the Heart Links section I put on my side bar over the course of the last week or so. It was in preparation for Congenital Heart Defect Awareness Week. I was trying to decide on what I could do to promote awareness, short of walking up and down the streets hollaring, “It’s CHD awareness week!” And we know how annoying that would be, so in honor of Jacob and other heart kids we have had a chance to get to know I am blogging about it. 🙂

If you are interested in reading some blogs about other amazing kids the three names on the side bar under heart links are some really cute kids with amazing stories.

CHD Awareness week begins Feb. 7 and ends on Valentines day, Feb. 14, which is also CHD awareness day. It’s purpose is to encourage awareness about something that very few people really know about or realize how common it is. I didn’t know anything about congenital heart defects until Jacob was in ICU. So, here are some statistics provided by The Children’s Heart Foundation:

  • Congenital heart defects are the #1 birth defect in the United States.
  • Congenital heart defects occur in 1 of every 100 births affecting nearly 1% of newborns.
  • Congenital heart defects are the #1 cause of birth defects related deaths during the first year of an infants life.
  • Congenital heart defects occur at least three times more often than childhood cancers and significantly more than pediatric AIDS. The mortality rate for these children may be as high as fifty percent, depending on the condition.
  • Nearly twice as many children die from congenital heart disease in the United States each year, as from all forms of childhood cancer combined.
  • For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects, the most common birth defect.

Jacob After Surgery

Because of research funded by non profit organizations like the Children’s Heart Foundation these kids now have a chance. The surgery Jacob received is one of the great advances in heart surgery in the last 15-20 years. So we give a big thanks for those who have dedicated lives to research and have supported and given to this great cause. With out you our son would never have made it.

Jacob 9 months old

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8 Comments

Filed under CHD, Heart, Jacob, TGA

8 responses to “Congenital Heart Defect Awareness Week

  1. I’m glad you posted about it the way you did. I’ve only started thinking about heart defects in the past year, as the baby of some friends was born with a hole in his heart. There’s so much I don’t realize about complications and all the things that can go wrong, but your candor really helps me learn more.

    What a miracle. What a miraculous age in which we live.

  2. I didn’t realize it was so common. We had a family member who didn’t make it. We barely got to know him, poor little guy. He put up a good fight for a couple of days, but ultimately wasn’t strong enough.

    Jacob certainly is a fighter. You are so lucky to have him.

  3. what a good lookin’ little guy. i’m torn a lot about modern day medicine… especially when it comes to prolonging life that isn’t really being lived. but this type of stuff renews my faith in technology and medicine. thanks for sharing the info.

  4. PM- I have been amazed at what I have learned, it trulyis a miraculous age

    Karen – I had no clue before Jacob was born, I thought it was some rare thing and I can’t believe how many heart kids I have met since then and the statistics just baffle me, all these kids are fighters and their strength and courage inspire and amaze me.

    FF- I totally understand where you are coming from. I didn’t have an extremely high opinion of modern medicine until our experience, it definitely renewed my faith 🙂

  5. I also didn’t realize it was so common. You’ve got a really handsome little boy!! I’m glad he made it (he has to keep all those girls in line!!) 🙂

  6. I have been amazed to have learned how prevalent these defects are. We lost a daughter to them nearly 5 years ago, and our youngest son, just 3 months old, is a week into his recovbery from surgery to repair the same defect.

    It never ceases to amaze me how many babies we see every day, in just this one hospital, who have undergone surgery for one or another heart defect.

    I had no idea that there even was a week to comemorate our children until after it was over, but I’m glad to have found this post about it!

  7. Erin

    I have been amazed to have learned how prevalent these defects are. We lost a daughter to them nearly 5 years ago, and our youngest son, just 3 months old, is a week into his recovbery from surgery to repair the same defect.

    It never ceases to amaze me how many babies we see every day, in just this one hospital, who have undergone surgery for one or another heart defect.

    I had no idea that there even was a week to comemorate our children until after it was over, but I’m glad to have found this post about it!

  8. It a good article and I’m glad you posted about CHD. I also have son with CHD

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